Welcome! We Are a Patient-To-Patient Support Community for People Living with Chronic Pelvic Pain.
Living with Chronic Pelvic Pain is a dedicated patient-to-patient support community for patients and families affected by Chronic Pelvic Pain. Living with Chronic Pelvic Pain is powered by BensFriends.org, a group of patient support communities for rare diseases, and is run by volunteer moderators who have been affected with chronic pelvic pain disorders. If you or your family has been affected by Chronic Pelvic Pain Disorders, consider Living With Chronic Pelvic Pain your second home. Living With Chronic Pelvic Pain , as well as the rest of BensFriends.org’s patient communities, is free for members to join.
Chronic Pelvic Pain is an Umbrella term to describe chronic pelvic pain including: Interstitial Cystitis, Endometriosis, and PolycysticOvary Syndrome. Chronic Pelvic Pain (CPP) is commonly defined as non-malignant intermittent or continuous pain in the lower abdomen, pelvis or intrapelvic structures, lasting at least 3–6 months. If non acute and central sensitization pain mechanisms are present, the condition is considered chronic, regardless of the time frame. Central sensitization is characterized by amplification or increased sensory perception, where stimuli that are normally not painful are now perceived as painful. CPP is in women not exclusively associated with the menstrual cycle, sexual intercourse or pregnancy, but is sufficiently severe to cause functional disability or to lead to medical care. Epidemiologically CPP has a greater incidence in women than in men, and is mostly present between the ages of 36 and 50 years. The etiology of CPP however is not clear. It can be difficult and complex to determine the cause of pain; in fact, no specific cause may be discovered. Many women are not able to identify a specific set of problems which can cause problems and allow for the diagnosis to be made. CPP may originate from one or more organ systems or pathologies and may have multiple contributing factors. It usually involves an interaction between the gastrointestinal, urinary, gynecologic, musculoskeletal, neurologic and endocrine systems. It can also be influenced by psychological and sociocultural factors.
This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
In 2007, Ben Muñoz suffered a rare form of stroke caused by an Arterio-Veinous Malformation (AVM). He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases. BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, Bens Friends provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives. Bens Friends is supported by donations from its principals and community. You can learn more about BensFriends.org at http://www.bensfriends.org or watch one of our videos at http://www.youtube.com/BensFriendsVideos
Why create an account?
Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:
Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.
Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.
Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.
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Sascha Gallardo – September 30, 2021 You probably have been checking a Ben’s Friends community site for a while. Maybe you have been feeling some symptoms and our site came out on your online search. Or maybe you have been diagnosed with the condition and reading other patients’ experiences is extremely helpful for you. Or perhaps you’re a relative or a caregiver looking for information that could help improve your loved one’s condition. We are happy to know that many people are […]
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Sascha Gallardo – November 1, 2021 Rare disease and chronic illness patients need to consult specialists or doctors who are very familiar with their condition. But especially in the case of rare patients, it’s not that easy to find someone who has many years of experience treating patients who have the same rare disease. Since Ben’s Friends is a network of patient communities, the majority of our members have consulted various doctors throughout the years that they were looking for a […]
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Sascha Gallardo – October 13, 2020 Getting the most out of your consultation with a doctor for a rare disease is already challenging. Now that we are also dealing with the Covid-19 pandemic, the challenge has been doubled. Considering the difficulty of getting an appointment and the risks associated with going to a hospital and being exposed to the virus, it is important to be well prepared and accomplish everything that’s needed and avoid further appointments as much as possible. Below […]
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Sascha Gallardo – May 11, 2021 After so many doctors appointments, you finally have a diagnosis. And as part of the treatment plan, you have to undergo a surgery. Although each type of surgery is certainly different from the other and would require some specific preparations, having a general idea of what needs to be done before the operation can help you better cope both with the surgery and recovery. Below are some general recommendations when preparing for a surgery. 1. Ask your friends […]
- Some tips on how to improve your mental and emotional healthby BF_Writer on July 29, 2022
Sascha Gallardo – June 7, 2021 Having a rare or chronic illness can be a source of stress. The different symptoms alone, even the mild pain and fatigue, can already lower one’s mood. Add to these symptoms the financial concerns, the worry about the treatment process, and not being able to do some of the things you love. Mental and emotional health are essential to physical well-being. Stress and negative emotions weaken the immune system which makes it even harder to cope with the […]